Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past month I have been noticing them more frequently. I assumed it was her quirky way and just part of a special needs personality. I think we all know what I mean when I say some people with special needs sometimes have quirky arm movements like tics. I started to get worried a few weeks ago when one night they happened at the rate of 1 each minute lasting for over 25 minutes. She would even hand me her cup of milk to do this hand arm mouth clinch movement and then get her milk back from me when it was over. I called the neurologist the next morning and she got us in as quickly as possible (2 weeks away). Ironically, Sadie also had an appointment with a pediatrician in her doctor's group for a penny size skin rash that next day. Dr. B was lucky enough to witness one of her movements and said it looked like a partial seizure.
This leads me to the appointment with Dr. F (the neurologist) yesterday at the hospital's EEG lab. After describing to the doctor these movements and also showing him a very short video of one off my blackberry. He concluded that he just couldn't say for sure. That she does have ataxia (drunken walk) and tremors (she is shaky) and she may just be having behavioral stems. When he described a behavior stem and I asked him if it was similar to us stretching or yawning or getting the shivers. He said yes. He said she might be doing it because it feels good and that we should try to remove her from the environment (if she is sitting then we should lay down) and that might make her comfortable and she won't do the behavior. He proceeded to say that partial seizures come in clusters and he asked if I see more than one at a time. A cluster is anything more than one. I couldn't conclusively say that they always come in clusters, but I do know they are more frequent when she is tired. Sooooo, Dr. F determined that he couldn't rule out behavior OR partial seizure, but one way to find out was to have another EEG, yay!!! not! Dr. F's nurse called when we got home to let me know that the doctor didn't want another routine EEG (she's had 2 already) that he wants a 4 hour video monitor EEG. Yes folks, I did say 4 hour not full hour.
So on September 3 we will be arriving at the hospital at 7:30 am after sleep depriving Sadie (putting her to bed at midnight and getting her up at 6am). She will have her little head mapped out with a red wax pencil and then gooey stuff put on each of the "right" spots and 26 wires smashed in the gooey stuff on her head all the while she is wrapped in a papoose/blanket burrito so she can't move. All of which takes 20minutes. Then we will be put in a small room large enough to hold on twin bed and one recliner chair and asked to hold her and play all in the hopes that she also falls to sleep so they can read her brain during wake and sleep. Oh and her little head will be all wrapped up in gauze and she will look like she just had brain surgery all except for the 26 wire pony tail that will come out the the back of her head and be attached to an EEG monitor for the whole 4 hours. The nurse did say that the 4 hour is a minimum and that if they saw "stuff" going on that she could be hooked up longer.
Many thanks to Nanny, she will be watching Shelbi Wednesday night and most of the day Thursday.
Yay!!!
